CA-125 Creeping Up

chaslowe
chaslowe Member Posts: 3
edited March 2014 in Ovarian Cancer #1
My mother was diagnosed with Ovarian Cancer in August of 2006. She went through six rounds of chemo ending in early 2007. Her post-chemo number was 14.0 in March of 2007 ... and of course we were thrilled. Current number is 39.9.

Her quarterly CA-125 numbers have been …

03/07 - 14.0
06/07 - 16.8
09/07 - 16.1
12/07 - 16.2

03/08 - 16.6
06/08 - 18.1
09/08 - 23.1
12/08 - 20.3

03/09 - 20.6
06/09 - 23.8
10/09 - 24.9

01/10 - 25.3
Current - 39.9

She wants to know if she is officially "no longer" in remission. IS there a number (35.0 or 40.0) that would define "no longer" in remission? I have read that many things can elevate your CA-125.

We go back in four weeks for more bloodwork.

Your input would be greatly appreciated. Thanks !!! Charles (:~]

Comments

  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #2
    Only a doctor can confirm a
    Only a doctor can confirm a recurrence, and for that he/she would need more than a blood test. He would most likely order a CT and/or PET scan. Also ultrasound of the pelvic area, lungs, abdomen, etc.

    A pattern of rising CA 125 numbers is suspicious, but not definitive. Normal range for the CA 125 is 0-35. It's not a good marker for everyone, however.

    What was your mom's cancer staged at when she was diagnosed?
  • chaslowe
    chaslowe Member Posts: 3
    #3
    Hissy_Fitz said:

    Only a doctor can confirm a
    Only a doctor can confirm a recurrence, and for that he/she would need more than a blood test. He would most likely order a CT and/or PET scan. Also ultrasound of the pelvic area, lungs, abdomen, etc.

    A pattern of rising CA 125 numbers is suspicious, but not definitive. Normal range for the CA 125 is 0-35. It's not a good marker for everyone, however.

    What was your mom's cancer staged at when she was diagnosed?

    Hi Hissy_Fitz,
    If I remember
    Hi Hissy_Fitz,

    If I remember my stages correctly they are 1a 1b 1c 2a 2b 2c 3a 3b 3c and 4. She was a 3c. She had a cyst as large as a grapefruit.

    She see's her doctor quarterly (Fidel Valea at Duke) and actually saw him yesterday for her routine exam and bloodwork. His nurse called today to tell me her CA-125 is up to 39.9 and she is scheduled for more labwork in four weeks. Ironically Dr. Valea had just changed her appointments from quarterly to twice a year.

    She is 84 years old, very active and has a very positive attitude. I don't think that she was even aware that this could happen.

    I realize that it's difficult for you to draw any conclusions based on this limited amount of information but anything that you could add would certainly be appreciated.

    One last thing. This afternoon she asked me whether she should tell her friends that she is no longer in remission. She has a large social network and they will all want to know about her lab results, and she doesn't know what to tell them. So I'm just trying to find an answer for her.

    Thanks
    Charles
  • leesag
    leesag Member Posts: 621 Member
    #4
    chaslowe said:

    Hi Hissy_Fitz,
    If I remember
    Hi Hissy_Fitz,

    If I remember my stages correctly they are 1a 1b 1c 2a 2b 2c 3a 3b 3c and 4. She was a 3c. She had a cyst as large as a grapefruit.

    She see's her doctor quarterly (Fidel Valea at Duke) and actually saw him yesterday for her routine exam and bloodwork. His nurse called today to tell me her CA-125 is up to 39.9 and she is scheduled for more labwork in four weeks. Ironically Dr. Valea had just changed her appointments from quarterly to twice a year.

    She is 84 years old, very active and has a very positive attitude. I don't think that she was even aware that this could happen.

    I realize that it's difficult for you to draw any conclusions based on this limited amount of information but anything that you could add would certainly be appreciated.

    One last thing. This afternoon she asked me whether she should tell her friends that she is no longer in remission. She has a large social network and they will all want to know about her lab results, and she doesn't know what to tell them. So I'm just trying to find an answer for her.

    Thanks
    Charles

    Hi Charles,
    Your mom sounds
    Hi Charles,

    Your mom sounds like she has a lot going for her, she's active, positive and has a caring son.As for what to tell her friends, well, she doesn't know that she is out of remission. I can tell you how I would react--I would tell my very close friends that I was concerned and why, but I would also let them know that my doctor wants to run more tests to find out exactly what is going on, since many things can cause a CA125 to increase.

    I firmly believe in the power of positive thinking, so in the interests of positivity, I would tell her that, yes, she's in remission unless something shows up on her next doctor visit and her doctor says otherwise. Also, when she sees her doctor again, you may want to inquire about a CT or PET scan.

    Having said that, I will add your mom to my prayers.

    Hugs,

    Leesa
  • Barbara53
    Barbara53 Member Posts: 652
    #5
    chaslowe said:

    Hi Hissy_Fitz,
    If I remember
    Hi Hissy_Fitz,

    If I remember my stages correctly they are 1a 1b 1c 2a 2b 2c 3a 3b 3c and 4. She was a 3c. She had a cyst as large as a grapefruit.

    She see's her doctor quarterly (Fidel Valea at Duke) and actually saw him yesterday for her routine exam and bloodwork. His nurse called today to tell me her CA-125 is up to 39.9 and she is scheduled for more labwork in four weeks. Ironically Dr. Valea had just changed her appointments from quarterly to twice a year.

    She is 84 years old, very active and has a very positive attitude. I don't think that she was even aware that this could happen.

    I realize that it's difficult for you to draw any conclusions based on this limited amount of information but anything that you could add would certainly be appreciated.

    One last thing. This afternoon she asked me whether she should tell her friends that she is no longer in remission. She has a large social network and they will all want to know about her lab results, and she doesn't know what to tell them. So I'm just trying to find an answer for her.

    Thanks
    Charles

    yes she is in remission
    Charles, I've been taking care of my 79 year old mother for over a year, and when she says she is in remission, she is in remission. Let your mother decide, not some number. My mother's CA125 never went below 20 and is now around 50, but with old people and their inflammations from this and that, I don't think it's a reliable test to trust. So yes, your mother is in remission. If her CA125 keeps going up, they will probably put her on tamoxifen, or up her dose if she's already taking it.

    Besides, does remission really matter? Most of my mother's friends have terminal diseases of one kind or another, and they keep on trucking.

    Mom does have more and more bad days due to cancer and chemo complications, but she doesn't connect the dots very well, which is fine. All the family wants is for her to be happy and enjoy the days she has left, so we spoil her every chance we get. Your mother talking about not being in remission may be her way of asking for a little extra attention.
  • msfanciful
    msfanciful Member Posts: 559
    #6
    Hi Charles,
    I wouldn't focus
    Hi Charles,

    I wouldn't focus so much on the ca-125 numbers. 35 is usually considered to be in remission although anything from allergies, colds, infections, etc., could cause to rise. Most would argue that the ca-125 numbers are not always a truly accurate gauge of cancer activity per-se.

    A more definitive way of knowing whether your mother is truly in remission (or at least a better indication of her true status), would be through a cat-scan or pet-scan.

    Hang in there.


    Sharon
  • chaslowe
    chaslowe Member Posts: 3
    #7
    msfanciful said:

    Hi Charles,
    I wouldn't focus
    Hi Charles,

    I wouldn't focus so much on the ca-125 numbers. 35 is usually considered to be in remission although anything from allergies, colds, infections, etc., could cause to rise. Most would argue that the ca-125 numbers are not always a truly accurate gauge of cancer activity per-se.

    A more definitive way of knowing whether your mother is truly in remission (or at least a better indication of her true status), would be through a cat-scan or pet-scan.

    Hang in there.


    Sharon

    Yes, more attention is

    Yes, more attention is definitely in the works. I am a 24/7 website developer-type and I am going to shut down for the next four weeks and do some things that she wants to do for a change.

    And you guys have been a tremendous help and have given me a good booster shot. Truth is that I'm the worrier in the duo and I really need to work on that. But I'm still going to take a month off from work ... cancer or no cancer !!! (:~ ]

    So Hissy_Fitz, leesag, Barbara53 and msfanciful ... thanks much and I wish you all the best.

    Take good care! I'll be back!
    Charles

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